Anybody with Systemic Lupus Erythematosus?

Question

I am 18 and was recently diagnosed with SLE and antiphospholipid syndrome. I have read as much as I could about these 2 diseases on the net but I would very much love to get to know people with the same condition as me. Please feel free to contact me at [e-mail]. And I would also like to know if there are any websites where SLE patients can share their problems about their diseases or where I can learn about developments on the disease. Also, I'm from Malaysia.Are there any societies in Malaysia involved with activities regarding SLE?

Thanx a lot 'hello'! I really appreciate it.

Answer 1

I have both APS & Lupus. I have had a few DVTs, TIAs, heart attack and what they now believe is a mild stroke. Living on Coumadin, aspirin and Plaquenil. I am on a forum that works with the top international researchers through their foundation. http://www.apsfa.org/medadvisory.htm The links are to find this forum and foundation are below.

I do not know of any specific groups in Malaysia. This is all I found for a groups in a search: http://www.lupus.org/support/International%20Groups.html

Hope this helps. :)

For those reading this and wonder what is Antiphospholipid Antibody Syndrome (APS)...this is it. I am sure everyone has heard of Lupus but I have attached more information below just in case.

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

Women are more likely than men to be affected by APS. Some estimates say that 75% to 90% of those affected are women. For example, it has been estimated by some doctors that one third of all of young strokes (defined as under the age of 50) are due to APS.

In obstetrics it is estimated by some doctors that up to 25% of all women with 2 or more spontaneous miscarriages have APS. Some doctors believe that 1 in 5 of all Deep Vein Thrombosis (DVTs), Pulmonary Embolisms (PEs), and even worse, amputations are due to APS. And it is believed that 10-15% of patients with Lupus also have APS. Still, with these statistics, APS rarely is discussed as a women’s health issue and is misdiagnosed often. Therefore the total number of people affected and true statistics are unknown really.

Antiphospholipid Antibody Syndrome (APS) is an autoimmune disorder in which the body recognizes certain normal components of blood and/or cell membranes as foreign substances and produces antibodies against them. There are two known forms of APS. APS may occur in people with systemic lupus erythematosus, other autoimmune disease, or in otherwise healthy individuals. Sadly, when most people hear about APS and it being referred to as autoimmune disease, they incorrectly confuse the terms autoimmune with acquired immune deficiency syndrome (AIDS); or they think this is a form of cancer.

Answer 2

search on lupus with google and you'll find all you could ever want to know instead of asking the question here!

Answer 3

My sister has Lupus and has managed it well for years. She has other health related issues to deal with because of the Lupus. Advice: Keep your life as stress-free as you can.

Answer 4

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